Supporting families with special needs
Lately, I have not been overjoyed with my children. They’re probably not happy with me either. I know they are only kids, but they are driving me crazy! They have all gotten to that age in between childhood and adulthood. Though the oldest is twenty, I still put him in this category because he is in college and still relies on us for his existence, even if he is gone more than half the year.
The things that set me off usually fall into three categories. First are the nuisances. Why do I find dirty dishes in every room of the house? What is so hard about finishing a snack and then bringing the dishes to the kitchen? If by some miracle they do make it to the kitchen, why can’t they be rinsed and put in the dishwasher? If you use the last tissue in the box, why can’t you throw away the box? Or how about getting another one from the shelf so someone else can find tissues when they need them?
Second are the troublesome things. Effort equals grades. Don’t tell me the teacher can’t teach or that he or she doesn’t like you. If you turn in the homework on time and don’t disrupt the teacher’s class, you can sleep through the rest of it. If I buy you the expensive calculator the class requires, don’t lend it out to friends who won’t return it, or who’ll break it. I don’t want to explain for the umpteenth time that money doesn’t grow on trees.
Third are the life lessons. Choose your friends wisely; they make a difference in how you see yourself. A little effort now can change your future; your life is like a bullet shot from a gun: make sure you aim high.
I think these are awkward years for both parents and kids. When our children were younger I would tell them to pick up the clothes on the floor of their room and it would happen because my wife and I said so. Now they think that if they are ok with the way they keep their room, we should be as well. This falls apart quickly when they tell my wife they have nothing to wear; as it turns out, all their clothes are in a pile on the floor. If they can’t tell what is clean or dirty how can we?
It can be a constant fight between us on every front. I get tired of saying, “Just do it,” or theirs and my personal favorite, “I’m not asking I’m telling”.
My son and I have been engaged in a long running argument.
Kyle loves being in High School Theater. In fact, he’s gravitated to various theatrical programs and productions, both at church and school, since he was a young boy. He loves the stage and works very hard at it. Bias aside, he’s good!
The pursuit hasn’t been easy. Cerebral palsy can limit his ability to be cast for the physically demanding roles. Prior to high school, he regularly won major parts, but the productions are now more heavily produced and carry a certain level of expectation. Regardless of how competent an actor, no director will tap a disabled person for the lead in the Lion King musical, where the part calls for dancing and lifting fellow members of the play over his head.
Because of these limitations, Kyle usually ends up in the back row of the chorus line or with a small part with a few toss-away lines. He is regularly disappointed, but always seems to take the situation in stride.
If only his parents were so understanding and easy going.
And herein lays the crux of our argument.
Kyle is a very accepting young man and dutifully auditions regardless of the production, no questions asked. I’ve grown frustrated not by the roles he’s won, but by a fact entirely outside his control. Semester after semester and year after year, the theater teacher has continually selected fast-paced musicals, punctuated by heavy doses of singing and dancing. This season’s production, West Side Story, is Kyle’s last play before graduation. I highly doubt the director will cast a young man with Cerebral palsy as the tough guy leader of a high school gang.
In other words, with his physical limitations, my son’s chances of procuring a leading role are non-existent even before the first audition call.
When my oldest was two years old he was enrolled in an early start program for kids with special needs. I remember the first time I saw them loading him on the bus. He was in his wheelchair being raised up to the door of the bus for his ride to the school. I remember my heart sinking, the thought of my two year old on a school bus made me worried and anxious. If I didn't cry I know I was close, it was one of those moments where I worried about my child, his life and future. I worried about him going to school and the other adults in his life. Did they care for our son like we did? All of these events were overwhelming, there was something new every week, working to get a diagnosis, surgeries, and therapies. It was all just mind-blowing to me. Thank goodness for my wife or I think my head would have exploded at some point.
Our life today is far removed from when we first got the diagnosis of Cerebral Palsy. The first few years of his life were harder than they are now, we understand the diagnosis and what that means for his life and ours and we have hit a stride of sorts.
Life has not been all smooth or rough for that matter; it has been up and down sometimes in the same moment. The joys like when I saw him stand on his own for the first time, or the hard times of being in a hospital watching them wheel him off for surgery. I know the operation was for his good but it doesn't make the fear any less. He would not have reached that joyful moment without the other, but it didn't make that hard moment any easier.
I love watching movies.
Though preferential to dramas and comedies, I’m intrigued by almost every genre, with the exception of horror films.A good plot will quickly pull me into the middle of the story. After a long week of work or hours in a hospital, it’s often an escape, a chance to unplug from the pressures of reality.
Admittedly, many of the movies we watch are predictable.Rarely are we shocked by what we see on the big screen.In fact, we’re often able to see the end at the beginning. But every now and again, we’re caught by surprise, like the sight of a bolt of lightening out of a clear blue sky. To me, those moments are great fun.
I love it when I say, “Wow, I never saw that coming!”
But while I like that trait in a movie, I am not a big fan of surprises in real life.
When it comes to our children, I wish I had the ability to see what was going to happen in the future. For example, recently we’ve been working on teaching our son how to drive a car.I wish I could look into the future, and see if we we’re successful and find out if he’s indeed able to drive.
Life seems funny that way. We work with our children on so many things never knowing what effect it will have on their overall health and wellness.
And we almost seem frantic on some occasions to get as much as we can in each week.I know we want to do all we can for our children but wouldn’t it be easier if we knew what would make the biggest difference for our children and just do those things.
Is that what drives us to fill our days with activities? Or do we live with some fear of our child ending up in therapy as an adult cursing us for not providing that one thing that would have made them whole?
I love the movie Forrest Gump. It has some parts I believe they could have left out, but for the most part I really enjoy it. Of course, the movie is a fun way of retelling modern history. They did an amazing job of integrating sixty years of America’s past into a two-hour film. Not only do they weave historical fact seamlessly into the story, but I think you get a sense of what people on all sides of the events were feeling about what was happening.
The other reason I love this movie is the character of Forrest himself. The actor Tom Hanks does an amazing job playing a simple man; not the smartest, not the most handsome, not the strongest guy though he can run, not born to wealth or even to a perfect family. There is nothing you can point to and say, “That it is why his life went the way it did.” Most of the time, he is rather confused by everything going on around him. His mother explains this fairly well when she says, “Life is like a box of chocolates, you never know what you’re gonna get.” Yet despite all of his personal confusion, life just seems to work out for him. I’m not saying everything goes his way, but on the whole things work themselves out.
Isn’t that how we think life ought to go? Most of the time I must admit I am confused. I try to have a plan; every once in a while I’m able to follow it. I think I’m headed the right way, but many times I just don’t get what is going on. I get upset when everything doesn’t work itself out.
I know the Bible tells me that God works all things together for my good, but it doesn’t always feel that way. Sometimes it feels as if every effort I put forward gets slapped down. Perhaps I expect too much when I ask everything to go my way. Perhaps I need to approach these moments with a different perspective.
